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We sat down with our panel of expert mom’s that are continuing to deal with chronic illnesses in their children; here are their thoughts…..
Prior to the diagnosis – were your thoughts and dreams different than they were post diagnosis?
No one ever dreams of having a special needs child. The child in my mind would attend college, have a great career and get married and have a family of their own.
~My thoughts and dreams for my daughter definitely changed. I envisioned her driving, getting married, and having babies. Those dreams may not come true now and it is upsetting.
Yes absolutely – prior to the diagnosis we had the same dreams that I am sure you had for your kids – active long life – watching our kids graduate from high school, college – going on to a great career – getting married – blessing us with grandkids – prior to this diagnosis our dreams for our kids we the typical. Post – it is hard to dream for our child past today – now we just want him to be happy every day that he is alive. We want him to do what he wants to do and want him to have a great quality of life. As long as we are able to keep him – our dreams will be for happiness.
~ Prior to diagnosis I realize that I had been in a lovely dream with minimal issues. Healthy & happy kids leads to no worries. Bring on a chronic disease and worries pile on. My dreams have not changed, but my carefree style has. Laughter and silliness does not come so easy. On the other hand, little things don’t bother me. There are so many larger issues that I deal with that the little stuff seems petty and insignificant. In some ways that is a blessing. “Don’t Sweat the Small Stuff” I have also learned to only worry about things I have control of. Keeping that in mind I try to relax. In some ways I think it makes me seem cold, but with our worries that we carry every day, we can’t handle any more. The stuff out of our control has to be ignored or forgotten.
How did you feel the first time it hit you that there was something very different about your child?
Sadness and disbelief.
~My heart broke. I felt I couldn’t breathe.
Total denial – not our child – this does not happen to us – it happens to someone else.
~ Very sad and upset with the future of my child. We worry so and want the best for our kids and then something happens, and you know that know matter how we gloss over it and make the best of it, our kids are different and as we all become less healthy each day, our kids are deteriorating faster than the norm.
Do you remember any thoughts when the doctor was telling you the initial results of your child’s diagnosis? What were they?
Confusion and denial – our daughter was only 12 hours old, how could they determine she would be developmentally delayed? My husband wasn’t even in the room at the time. I was scared, upset, and angry.
~It was a blur. Although in my heart I already knew what he was going to tell me, I still had hope that it was all a bad dream.
Total shock – it felt surreal to be sitting there looking at this man as he was telling us that our son had the worst type of MD and that he would not live long. I remember looking at him thinking – his mouth is moving but I just can not believe what is coming out of his mouth.
~ My first thought was to console my husband. I think I was better at coping with the issue than my husband was. I had lived with the disease and knew life would go on. He did not have the same knowledge. I think it is hard for a dad to have a diseased son. It is a guy thing I think.
How do you think your life would be different today if your child did not have the disability that they have?
We would have a lot more down time – no appointments, therapies, etc.
~My life would be the same now as prior to diagnosis. Going through the motions of the day to day activities. Not appreciating every single day as I do now.
It is hard to say because it is all so new to us – I think I would not value life as much as I do today. I think I would be taking everything for granted as I did often prior to the diagnosis.
~ I’d smile and laugh more. I also think the disease had brought me very close to my kids. I have an excellent bond with them and I know it is because their disease had forced me to be more involved in their lives and ask more questions. Try not to get close to your child has you give them a shot in their butt or on their arm or thigh.
Do you find yourself getting jealous or envious of other healthy kids?
Yes – all the time. Even though we have a healthy son, I am very envious of moms with healthy baby girls.
~. I am envious of other children her age that will be able to do the many things she wished she could. But definitely not jealous.
Absolutely – especially when there are simple complaints made by people or kids around me – I can not help but think of how horrible our son will have it.
~ Never, I often think how lucky we have the disease we have. Visit a hospital and see the children with mental challenges or greater issues. I count my blessings.
Who surprised you the most with their support? And how did they do this?
No real surprises – we have a close network of friends and family who all lend support even now.
~My friends have been my support. They have cried with me and listened to me.
Two wonderful women have been sending us cards in the mail – this has been such a blessing for we have a constant reminder of how much we are loved.
Also – there has been a few acquaintances that have given me advice that has been so wonderful that without it – I am certain I would be a noodle at this point.
~ A friend sent a “I Spy” book to my son. A boss let me cry in his office and told me to go home and hold my child. My parents who have rescued me and gave me a few nights of peace, quiet and no worries.
Did you receive support where you most expected it?
yes
~I did. I don’t know if I was accepting of it though.
Absolutely – friends and family have been amazingly wonderful – we have even drawn support from folks we barely knew.
Where did you draw your initial strength from?
I floundered, but I eventually found the strength in myself. There was a period of time after our daughter’s diagnosis that I questioned by belief in God. Even my husband and I dealt with the diagnosis very differently. It’s been a tumultuous year, but I have a renewed faith in God and our marriage is stronger than ever.
~My initial strength came from within me for my daughter. I could not show her how upset I was because it would have frightened her. I had to be strong for her.
From our child and our children. Knowing that we have them today and maybe tomorrow. Being grateful for the fact that at least we know when somewhat the path and that he will not be ripped away from us without some notice.
~ My husband and mom.
Were there different situations, people, times in which you drew strength or was it pretty consistently the same source? Explain
Consistent.
~I found that I was the strongest when surrounded by my immediate family. I had to be strong for them. However, when I would be discussing her illness with co-workers, acquaintances, or strangers I would break down. I didn’t need to be strong for them so that was when I was vulnerable.
There has been different situations and different people that I have found my strength from. I was told that God has been preparing me for this my whole life. I need to draw on that from time to time depending on what is going on.
~ I am independent and did not rely on others for help. I did not want to hear negative issues so I stayed away from help.
What is your source of strength today?
My daughter. I had my revelation when I asked myself what kind of mom she needed. I decided at that point to stop feeling sorry for us and to be her advocate.
~My source of strength today is my peace with what I was put here to do. I draw strength from God. I do not like what has happened but I have accepted it.
Many, many areas, our son, our other kids, my husband, God, family, friends
~ My husband, my parents and my will power.
What moment made you realize that you could laugh again?
Pretty early on – I figured I’d rather laugh than cry!
~When I realized that I had no control and I could not make the disease go away. When I realized that I needed to be thankful for each and every day.
At times I do not feel like I can laugh again. I do not think I have reached that point where I can laugh. I do find time to be grateful and to smile. But it is hard to laugh.
~ Not sure when we laughed again, but the little things make you laugh.
.....Dropping a syringe in the Gulf of Mexico and seeing bystanders see it floating in the water and talk about how awful medical waste was…..
....Tanning on the roof of our car in a hospital parking garage
.....Seeing two blood test meters lined up on the cabinet for the mid night blood tests
......Seeing peoples eyes blink when your child says they are high or low (blood sugar)
What or where was your biggest cry fest, break down? Looking back on it now – was it as good as it felt at the time?
Probably the day she was officially diagnosed with Rubenstein Taybi Syndrome at 3 months of age. I had been holding onto any shred of hope that the results were wrong. That’s when I had my crisis of faith. I needed to come to grips with the reality of her diagnosis.
~My biggest breakdown was the day the Dr. told me he suspected that she had her illness. I don’t know if it felt good then and now.
I was cleaning up under the bunk beds about 3 days after the diagnosis. I was actually in a good mood. I crawled under there to get the toys out and thought, boy this is a great dark place and it feels pretty good – so I just laid there, on the floor and cried for a ½ hour.
Afterwards, I felt a bit silly – but good because I really needed that good cry.
~ Not sure I ever had a major cry fest. I always am strong with the kids need the medical help and I am a rock until I know that they are in good hands. Then I cry. I cry every time they go to hospital, every time we get through an emergency, every time they go unconscious or have a seizure…… Like I said, I am a rock until after the emergency has passed, then I cry.
What phrase, comment, song, situation, brings instant tears to your eyes?
My tears come unexpectedly – but always when I see a “short” school bus, after attending other kid’s birthday parties, people complaining about the increased cost of college tuition. Parents wouldn’t complain if they walked a day in a “special” parent’s shoes…
~When my daughter tells me all the things she is going to do when she grows up. How she is going to take care of me when I am old. That causes tears inside not outside.
Amazing Grace, Be not afraid, Carrie Underwood’s song about the mountain – pretty much depending on the mood any thing will make me cry.
~ I can never watch the Willy Wonka and Chocolate Factory without remembering the New Year’s eve, when we called the doc at 5 minutes after midnight and they said to take our son to the hospital. We went in with croup and came home with a diabetic
Just say glucagon, seizure, collapsing, 911 and I go weak.
Say the flu or diarrhea and I get a pit in my stomach dreading taking care of a sick diabetic.
How long after the diagnosis did you stop crying (every day)?
I really don’t know - it seemed like a long time. Even now, I cry randomly. Some days are definitely harder than others when I realize how behind our daughter is developmentally.
~It probably took a few months. I had to remain calm and strong when my daughter was around. I usually cried when she was not around. Now, I still have my moments but try to stay busy.
2 months – now it is just every other day
~ Not long, I toughed it up and quit the crying.
Do you or did you ask God, Why me? What did He say?
All the time – I never received an answer, still waiting. My father is a devout Catholic and he snapped me back to reality by asking “Well, why not you? What makes you feel like you’re any different than anyone else dealing with this?” At the time I was kind of ticked, but I was able to see the value in his comment
~I did ask him why and was very angry at first. But, I started to attend church and realized that he was waiting for me.
I started to ask him – but each time I could not get it out – early on I had heard a passage in church about God working through the blind son – and so I guess I just have to believe that He has a reason and is going to work miracles through our child. So if I do ask him Why – I guess that would be like me not believing.
~ I always thought God picked the right kid for the diabetes. My son is so wonderful and never gave me a hard time. I figured God picked the right kid and the right parents. Then when our daughter also got the disease, again we coped.
Did you or do you ask God, Why my child? What did He say?
Again, still waiting for an answer. However, I do know that everyone she comes in contact with falls in love with her. She has the sweetest demeanor and the best belly laugh you’ll ever hear.
~I did. He told me that this is what I was put here to do. To Love her.
Nope
~ See above
Did you or do you feel guilt?
Yes – but not as much as I used to.
~I feel guilty all the time.
I do all the time. I think of everything I could have done different before we go pregnant. But then I realize that I can not change the past – just make the best for our baby today.
~ Maybe a little, heredity plays a role and I transferred the flaw. But I had no control nor would I have changed my pregnancy plans.
If you could relive your life without this disability, would you?
I can deal with her special needs, but I’d like to forgo the medical issues. Our overnight hospital stays were the longest days of my life. There is nothing worse than seeing your baby lying in a hospital crib.
~I don’t know. I have met many wonderful people and learned many lessons so while I still wish my daughter does not have to endure the future, I don’t know if I would change anything.
Absolutely – without a doubt. I would just pray that I would be as grateful for life and for what God has given us as I am now.
~ Of course, for my kids sake.
If you could relive your life without this child, would you?
No
~Never. She has always been special and even more so now.
Never – I would take this on over and over again if I could keep him forever.
~ NO NO NO NO NO
What was the hardest thing about your life during the diagnosis?
Trying to maintain a sense of normalcy when it seemed our world was crashing around us.
~Trying to get by day to day and be as brave as I could for her.
Staying positive – not crying – trying so hard not to become Angry at God.
~ Figuring out how to handle the additional work/care/doctor load with the rest of life.
Do you remember what you thought was the hardest thing about your life prior to this diagnosis? If so, what was it?
Everything seems pretty trivial back then!
~The hardest thing about my life prior to the diagnosis was taking care of 4 children, maintaining the house, and working.
I am embarrassed that I thought my life was challenging before this happened. I would complain about working full time – I would complain about keeping up with housework and laundry and dishes and all that crap that mom’s get to complain about. I would complain that this ached or that hurt or so and so happened. Now that is all small, silly stuff that I really would never want to complain about again.
~ Don’t remember.
What is the hardest thing about your life today?
Time management - trying to maintain a happy family and clean household, managing her calendar - attending 6 therapy sessions per month and bi-weekly visits from the Help Me Grow program along with managing all the paperwork / bills that literally come in on a daily basis. Oh – and trying to work too!
~Same as above except adding in dr’s appts, physical therapy and me time.
It is so hard for me not to tell everyone and anyone I meet about our son. It is so hard not to spread the word on his disease because I want to and feel I have to raise awareness so we can cure him.
~ Trying not to worry.
Besides your child, what is the Best thing about your life today?
Finding joy in the littlest things.
~My drive to know more and make a difference in the lives of others suffering from this illness.
My husband, our kids, that we get to get out of bed everyday and live life.
~ My family and the love we all share
What about your child instantly brings you joy?
Her laugh and smile
~Her energy.
His smile – his laugh – his hugs – he is the best hugger ever
~ Their smile, their ability to joke about the disease, their carefree nature. Their ability to adjust with their issues and not let it slow them down.
Did you ever feel, prior to the diagnosis, that you needed to do more with your life?
Yes – but I wasn’t sure what.
~Absolutely. I have always had a feeling that I needed to do something to make a difference.
I did – I felt like I had to help people – it was odd because about 2 months prior I started thinking about starting a non profit.
~ Never
What people in your life have made you the most disappointed with regard to your child’s disability?
A friend who is actually a special needs teacher. I would have expected more of her as a friend, but also as someone who sees this every day.
~Some immediate family members. Sometimes they act as if nothing is wrong and tell me my daughter will be fine. Not sure if it’s denial on their part or the need to try and make me feel better but it is disappointing.
The people that choose not to listen to me when they ask about his diagnosis. Seriously – if one more person says – Oh, he has MS – he does not – I did not say MS – I said Muscular Dystrophy – two different illnesses – both stink – but at least pay attention if you are going to ask about it!
~People who don’t get the disease. Close family members that just don’t get it and will never get it.
When people say, “how can I help you” – really – honestly – what do you want to say?
It would be best if someone would just offer a specific suggestion. My sister is awesome – she’ll ask to take my kids for the afternoon or will invite us over for dinner.
~I don’t even know what I want to say. That’s a hard one because it depends on my mood at the time.
I think the Nike Commercial – “Just Do It’ - I am lucky if I remember to brush my teeth in the morning, let alone figure out what I need – So if you want to help – just do it – whatever you think we need – a visit, a call, take the boys for an afternoon, whatever you think we need – sure, just do it and we will take it. Even if it is just a hey, how are you today, that is amazing and it helps us cope.
~ Thanks, but I don’t think you can help me.
Name the top three things that you need help with this week.
Writing bills, managing paperwork and the never-ending laundry pile.
~Nothing really.
Laundry, cleaning the house and making dinner- but what mom doesn’t need this help.
~ cleaning, laundry, cooking
What was the last thing you wanted to hear from a friend, coworker, passerby – whomever – upon their discovery of your child’s diagnosis?
Most people that knew of our daughter’s diagnosis were very nice. It was the strangers who infuriated me with their stupid comments – “Wow, your daughter is really small. Was she a preemie? How much does she weigh?, etc.”
~She will be fine. I know someone who knows someone that has it and they are fine. UGH!!! (half the time, the person they know doesn’t even have the same illness)
Other good ones:
Are they sure?
Well it doesn’t run in the family, so it must not be.
“He’ll be fine – I knew someone with MS and they are still alive today”
~ Not sure
What do you need more of from your husband?
My husband is pretty wonderful. While the burden of things usually falls on the mom, I understand that he needs things too. We’ve discovered the best approach is to ask each other specifically when you need help with something. We’re so caught up in things sometimes; we’re not always able to see what the other may need.
~I need him to be more passionate about her illness. I think about it 24/7 and I don’t think he does.
Most likely what every wife needs – more backrubs and less clutter.
~ Take over more responsibility.
What do you need more of from your immediate family?
My family is wonderful and helps on a regular basis. Other's needs to learn to treat she like a regular kid and to stop with the pity looks and stupid comments about her size.
~I need more help with childcare. I need offers to carpool my daughter to physical therapy or take her swimming while I attend to my other children.
Exactly what they have been giving us – support and love.
~ Nothing – make sure sick people stay home, it is OK to miss thanksgiving dinner if you are sick. Try to get all families to understand that one.
What do you need more of from you?
Increased confidence in my mommy ability. I know I’m doing the best I can and my kids reflect that, but sometimes I feel like I stink at this. I tend to be very hard on myself.
~More TIME
To stop thinking about this disease 24 / 7 – I need to focus on life not on death.
~ More time to breathe and relax. Slow down and smell the roses.
How has this experience made you a better or worse: woman, wife, mother, daughter, sister, friend, co-worker, person?
Better all the way around. It’s been interesting to see relationships change – I’m not as close with some people, yet have found myself closer to others and have forged many new and valuable friendships.
~Better – I listen to my children now. Before this, I took life for granted and often was so caught up in the day to day grind that I didn’t necessarily give all my children the attention that they deserve.
I have also found that I am much stronger that I ever thought that I could be.
~Worse
Sometimes I have a hard time sympathizing with people that complain about the most menial non-important issues.
Better
I have come out of my bubble and become much more compassionate than I ever was before. I have a completely different perspective. It is almost happened to me as quickly as a light comes on – my entire life has changed and I appreciate every little thing.
Worse
I feel like often, this disease is all I think about – how do we beat this? What will the next few years look like? I drive past a funeral home and think, hmm is that a good place to have a wake. I have to think differently for everyone’s sake.
~BETTER - The experience has made our family very close. My husband and I are very close and help each other. I have learned to let the small stuff go. I am a great organizer and therefore great at multi tasking which is great for work.
~Worse – I don’t laugh as much. My mind strays to the kids and their health. I am paranoid of nasty germs.
How has this affected your child’s siblings?
I really feel like I do a good job sharing my time between my kids. My son LOVES attending his sister’s PT and OT appointments. They have the best toys to play with there. I worry about their relationship as they age and hope that he still loves his sissy and isn’t embarrassed by her differences.
~The babies have not been impacted. Her other brother has remained distant and does not really want to talk about it. However, he has volunteered to attend her summer camp this year.
They are so young to even know what is what. But I do love to hear the boys say muscular dystrophy – they say it so cute that I have to smile. We are fortunate that they are so young that this will just be a normal day and normal life for them.
~ When one has the disease, the one without vies for attention. The diseased child determined the family schedule, the meals, playtime etc. This can be hard on the non-diseased child. I remember my daughter walking around with a band-aid on her forehead looking for attention.
How has this affected your marriage?
It was hard at first – but we’re doing fine now.
~Sometimes it feels like we are closer but sometimes I feel all alone.
It will and has made it stronger ~ we both have completely different perspectives on the “why” but it is each our own way of coping. I am outwardly so much more emotional than my husband, but I think he is equally as emotional but just does not show it like I do. I have to remember that he shows his hurt differently than I do and adjust to that.
At the end of the day, we made our baby the way he is and we love him so much and so much more than anyone else can ever imaging loving him. And for that are grateful.
~ We are best of buddies. We could not be any closer.
What have been your biggest roadblocks?
Not knowing what to do or what resources we have. Much has been trial and error.
~Trying to get as many answers as I can. Seems that each medical professional has something a little different to say and it’s finding what is the best care for my daughter.
The biggest disappointment is that no one in the service industry will care as much as we do –specifically the folks at the doctor’s office that answer the phones, or the people that you have to interact with to get your child the things that he needs. Not the doctors or the nurses or the actual people that want to help you, but the ones that connect us to them that really do not care that we are calling. I mostly dislike the tone in their voice as they take the message or tell me there is a waiting list for my son’s needs as I hear the “gosh I have better things to do than to take your message for my boss” tone. That is my biggest roadblock, not to reach through the phone and choke that person. I don’t, I just smile and repeat my mantra. Then eventually talk to the person who really cares about our child.
~ Dealing with insurance, sick people at parties, planning around a schedule that was not that flexible.
How has school been? Any surprises or disappointments?
She attends daycare twice a week and they do a great job with her. She enjoys interacting with he peers.
~School has been extremely supportive and understanding.
Total surprise at the amazing, incredible on the spot we are there for you support from his school. Our heart is now totally wrapped around his teachers and his school. We instantly tear up when we think about how much they have done for him and how much they care.
However, the public school “system” has been a total disappointment. Note to the note taker at the intake office– please get my son’s illness correct when I tell you what it is. Also, he is not a number to file away – remember he is human, he is a boy, he is normal and you will be lucky if he goes to your school.
~ We have had excellent luck at school. The staff and teachers have been extremely supportive.
Who has touched your heart when you least expected it?
My son – he is very protective of his sister, yet rough-houses with her like she’s just a regular kid.
~My daughter. She has been so strong and positive. She is stronger than I am.
I have to say my friend Niki has been a gift from God. Without her words early on, there is no way I would be ok today. Honestly, she is my Godsend and she will never know how much I love her for that.
How do you get out of bed every, single day?
Every day is a new day – be grateful for that.
~With both feet on the ground. Thankful for the day before and asking for the strength to get through the new day.
Not getting out of bed is not an option (of course except when the kids are on a sleep over)! I do it because I want to get every second that I can while I can. I am so lucky to have what I have in life and the minute I forget that will be the second I lose it.
~ The sun, my job and my kids and husband, not necessarily in that order.
How does your child get out of bed every day and go on living?
She is still young and doesn’t know that she’s “different” I feel it’s my job to ensure she’s treated like every other kid!
~Just like she used to. Crabby and not wanting to go to school!!!
He does not know any different. He has felt this way his entire life – only we never knew it – now we do and we are grateful for everything we have.
~ I take on their burden and worries for them. They get up and get to be kids. Their time will come when it is their burden. IT is our job as parents to let them be kids.
What words of wisdom repeat in your head – or rather – what is your mantra?
It’s going to be alright, we can do this.
~Do not let discomfort irritate, but educate.
God has been preparing me my whole life for this moment. I am the luckiest person to be chosen by God to have this child.
~ I only worry about things I have control on.
How has your child inspired you?
She makes me a better person.
~Her energy has inspired me.
His infectious smile and his huge lovely eyes inspire me every day
~ they don’t let the disease get them down.
How has your child inspired others?
She brings out the best in everyone.
~She has impacted many people. Her therapist, her chiropractor, and her yoga instructor have all thanked me for allowing my daughter to be in their lives.
I think just his general spirit of life makes others happy. I remember when he was a baby, everyone would say what a great hugger he was – and he still is – he gives the best hugs.
~ they are organized, mature, prepared. How many teenagers have those traits?
Is your child happy?
She is really one of the happiest babies I’ve ever met.
~She is happy. There are times when she is sad but for the most part, she is happy.
He is so happy, I don’t know a happier kid – really, I don’t
~ Yes, I certainly hope so.
Are you happy?
Yes, but honestly, I feel I’ll always have a little underlying sadness. Many occasions are best described as bittersweet.
~I am happy. I am happy for everyday that I have with my daughter and family.
Right now, I am happy and sad at the same time. I have to be happy to have him, to know what I know and to be allowed to keep him in my life today. But I am so sad for the tomorrow that I do not want to come.
~ Yes, extremely
What do you wish for the most for your child?
To be happy in whatever she wants to do in life.
~I wish that she finds the peace that I have. I wish that she finds the purpose she has been put here to do.
I wish that he has friends. I wish that he smiles every day. I wish that he does not feel he has to struggle in life, but that he loves life. But most of all, I wish for a cure.
~ A long and healthy, symptomatic free life.
What do you wish for the most for you?
To have a happy and healthy family.
~Continued strength and drive.
That I find a cure
~ I hope that I have peace and when I look back I know that I did the best I could do.
What are you most proud of as a mom?
Having two happy and well-adjusted children who know they are infinitely loved and supported.
~My children. They are special and a gift from God.
That despite all my efforts before I was a mom, I have turned into my mom. I say what she said, I do what she did and I love just like she loved me. I know my kids will be wonderful because of that. Thanks mom – I love you!
~ My kid’s and marriage successes.
Knowing that I helped my children deal and cope with their disease in a mature, responsible manner.
Knowing I let my kids be kids.
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